EXPERT CONSULTATION ON UNLOCKING GLOBAL COLLABORATION TO ACCELERATE INNOVATION FOR ALZHEIMER S DISEASE AND DEMENTIA.

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1 EXPERT CONSULTATION ON UNLOCKING GLOBAL COLLABORATION TO ACCELERATE INNOVATION FOR ALZHEIMER S DISEASE AND DEMENTIA June, 2013 The Harris Manchester College Oxford, United Kingdom Background The OECD workshop: Anticipating the special needs of the 21 st century silver/ageing economy: from Smart Technologies to Services Innovation, hosted by WASEDA University on September 12-14, 2012 with the support of the Japanese government (MIC and METI) and involving APEC countries concluded that innovation will be needed to meet the challenges and opportunities of global demographic change and mitigate the health, social and economic impacts of ageing. In particular, participants agreed that international action is required to accelerate innovation in areas of critical need such as Alzheimer s and dementia by leveraging advances in biomedicine and the sharing of data at a global scale. Experts called for the development of an urgent and global Alzheimer s strategy that includes critical re-evaluation of well-accepted traditional concepts of healthcare services, expanded research investments, coordinated strategies to address the big data challenges, and recognition of the massive implications of Alzheimer s for economic growth. Objectives of the Consultation The aim of this consultation is to stimulate discussion and the highest possible level of expert engagement in setting out an agenda for OECD action to accelerate innovation for Alzheimer s disease and dementia. Specifically, the objectives are to: Provide a space for country experts, policy makers and other stakeholders to share views on the main scientific, technological and policy challenges Alzheimer s and dementia raise Create an opportunity for multidisciplinary exchange Capture views on how to move forward and develop concrete ideas for OECD action The Consultation will be held on June, 2013 at The Harris Manchester College (HMC), Oxford University in collaboration with the Global Coalition on Aging and Oxford s HMC. 1

2 AGENDA 1ST DAY ROUNDTABLE 1: ALZHEIMER S AND DEMENTIA RESEARCH TODAY 1. 13:30 14: :00-14:15 Registration and Coffee Opening of the Meeting and Introductory Remarks Following welcome remarks and introductions, a brief presentation will be given of the Consultation goals and structure :15-14:45 14:45-15:30 OECD Secretariat Ralph Waller - Principal of Harris Manchester College; Pro-Vice-Chancellor elect of the University of Oxford Why accelerating innovation for Alzheimer s and dementia is a global priority Michael Hodin - Executive Director, Global Coalition on Ageing, United States Alzheimer s Disease is a global social and economic challenge, it will significantly increase with demographic change. This session will discuss the strategic goal of this initiative: to foster the expansion of 1) new knowledge, 2) research and development resources and 3) technical capabilities, which will enable countries to reduce the prevalence of Alzheimer s disease (modest delay of five years in the onset of brain disability can reduce the cost and prevalence of this chronic condition by half; this view is widely shared by experts in the field). Biomedical Innovation for Alzheimer s disease and dementia: latest advances Jean-Noël Octave - President "Institute of NeuroScience", Catholic University of Louvain, Belgium. Takaomi Saido Senior Team Leader, Laboratory for Proteolytic Neuroscience, RIKEN Brain Science Institute, Japan. This session will review latest advances in biomedicine for Alzheimer s and other neurodegenerative disease (e.g. innovative diagnostics, targeted therapies, regenerative medicine, gene therapy). It will highlight the main scientific and technological challenges to the diffusion of these therapies/diagnostics to point of care. It will open the discussion on the link between scientific and technological challenges and governance. 2

3 5. 15:30-16:15 From Bench to Bedside : meeting the needs of patients, academia, and industry Richard Johnson - CEO, Global Helix LLC; National Academy of Sciences Board on Life Sciences; Advisory Council, Global Coalition on Aging, United States Martin Rossor - Vice-Chair, JPND Scientific Advisory Board. This session will address the main challenges in moving innovation in biomedicine for Alzheimer s disease from research to point of care; the new tools and techniques and platforms of research; the knowledge exchange models between public and private sector. It will discuss the need for interdisciplinary research and the promise of technology convergence in the development of diagnostics and therapies for Alzheimer s disease. It will consider the major ethical and regulatory challenges as the range of research focus is extended to healthy people who are merely at risk for the disease but could benefit from preventive therapies :30-17:15 17:15-18:00 COFFEE BREAK Addressing the Big Data Challenges Robert Simpson Oxford, UK Donald Stuss - President, Ontario Brain Institute, Canada The multi-factorial nature of the neurodegenerative diseases requires the collection, storage and processing of increasingly large and very heterogeneous datasets (behavioural, genetic, environmental, epigenetic, clinical data, brain imaging, etc.). No one nation has all the assets to pursue this type of research independently. This session will look at the large scale data collection, storage and analysis problems that need to be solved over the next decade in order to effectively harness technological progress and ensure that data will be turned into useful and actionable health information. What data can be shared today? Thinking about the tomorrow. Robert Cook Deegan - Director, Center for Genome Ethics, Law and Policy, Institute for Genome Sciences & Policy, Duke University, United States Simon Lovestone - Professor Old Age Psychiatry, Director NIHR Biomedical Research Centre for Mental Health, King s College, UK The development of new diagnostics and treatments for Alzheimer s disease requires large science and a new approach to clinical trials. Access linkage and sharing of data on Alzheimer s disease and other dementias remain, however, a serious challenge. This session will discuss what can be shared today /should be shared to accelerate innovation. It will review the major technical and policy challenges to international sharing of data (interoperability, linkage, privacy and security challenges, IPRs) and how advances in 3

4 information technology is transforming the clinical trial paradigm. It will consider the emerging new role of social networks as patients become agents of innovation. Dinner Speaker (s): (tbc) 2ND DAY CREATING AN ENABLING POLICY ENVIRONMENT FOR GLOBAL COLLABORATION 1. 8:00 Coffee and Registration 2. 08:45-09: :00-09:45 Opening of Day 2 of the Meeting A brief presentation will be given of Day 2 goals and structure. Major policy trends and new regulatory paradigms for fostering the translation of biomedical innovation for Alzheimer s disease 4. 09:45-10:30 Philippe Cupers - Head of Sector, Neuroscience, DG Research and Innovation, European Commission Mario Romano - Senior Policy Manager, Intel Corporation, Belgium This session will look at the main and most recent trends globally, and those that are country specific, in policies to support the safe and efficient translation of biomedicine and health technology for Alzheimer disease, including initiatives relating to the ethical and social impact of biomedical research for Alzheimer s. Speakers will discuss the advances that have been made as a result of these policies and what further progress is needed. This session will also look at whether multidisciplinary research and the combined use of technologies raise any specific policy challenges for the translation of biomedical innovation to patient care. It will discuss how convergence is being addressed in governance models at present. Fostering Open Access for Alzheimer s and dementia research Walter Kukull - Director, National Alzheimer's Coordinating Center, United States Giovanni Frisoni - Deputy Scientific Director of the IRCCS (Scientific Institute for Research and Care), Director of the LENITEM (Laboratory of Neuroimaging and Telemedicine at the IRCCS-FBF, Italy This session will discuss opportunities and challenges of open access and open data platforms. It will review the open access policies emerging across OECD countries and their implications. It will look at lessons learned from concerted multidisciplinary efforts to collect and process large scale national and global data and how these can be applied to Alzheimer s and dementia research ( for example, the Brain Activity Map (BAM) ; the neugrid project; the recent Human Genome Sequencing Project in the UK). It 4

5 :30-11: 15 11:15-12:30 12:30-13:15 will discuss what is needed to reach international agreement on standards and best practices for data deposit, management, access and sharing. Towards an integrated data ecosystem for new smart models of care and research Tia Powell - Professor of Clinical Epidemiology & Population Health, Professor of Clinical Psychiatry & Behavioral Sciences, Albert Einstein College of Medicine Yeshiva University, United States Mehdi Khaled, Vice President, Healthcare & Life Sciences, Oracle, Singapore This session will discuss the challenges in designing and implementing an integrated health and social care data ecosystem for new smart models of care and to sustain new research platforms. It will discuss progress through concrete examples of initiatives in OECD countries (Denmark, Finand, the UK). It will also discuss the opportunity costs to governments and to patients of not making best use of the large streams of health and social care data available, and what frameworks are needed to make progress, including the legislative, policy and regulatory environment; health data governance; technological infrastructure; and development of necessary skills. Coffee Break Innovative partnerships to facilitate the translation of biomedical innovation for Alzheimer s disease Lefkos Middleton - Professor of Neurology, Neuroepidemiology and Ageing Research Unit, School of Public Health, Imperial College London and Consultant, Imperial College Healthcare NHS Trust, United Kingdom. Zaven Khachaturian President, PAD2020, United States This session will look at partnerships in place or being developed at global and national levels to facilitate the translation of biomedical innovation (e.g. national and international public/private collaborations for discovery and validation of biomarkers, for the development of global clinical trials; but also private/private interactions and new models of products development and commercialisation). The session will discuss potential work on case studies on innovative partnerships which would, in a policy context, aim to identify any common characteristics of these initiatives, their mode of knowledge exchange, the main challenges and opportunities they are facing and how policy is or might address those challenges and opportunities. How can the OECD contribute to moving the international agenda forward? Moderator: OECD Secretariat This session will take stock of the main messages from the Consultation, highlighting priorities for an international research and policy agenda and setting out a roadmap for OECD action. 13:15 Concluding Remarks - End of meeting 5

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